A/HRC/43/42/Add.1 South Africa has been exemplary as compared to several other countries in the region that have records of attacks against persons with albinism.9 Court officials and prosecutors have been exposed to harrowing cases, with little or no trauma counselling, with most expressing personal commitment to ensuring justice for victims and their family members. Case proceedings have been publicly shared, as a form of deterrence, with the police embarking on awareness-raising programmes in communities where attacks have occurred. The court judgments from these cases have been detailed in the findings of fact.10 Such facts have informed the Independent Expert as well as prosecutors across the region about the patterns of these attacks, in a manner that, in turn, informs the advocacy and protection measures in the Regional Action Plan on Albinism in Africa.11 31. While these positive initiatives are commendable, challenges and obstacles to the enjoyment of human rights remain for persons with albinism. However, the Government has identified many of these challenges, and steps have been initiated to address some of these. The Independent Expert promotes a “twin-track” approach to the situation of persons with albinism. The general approach is active integration of the issue into relevant sectors, such as disability, health, education, gender, and migrants, among others. The specific approach is the carrying out of particular concrete measures to address pressing issues including security. In this regard, general and specific measures are outlined in the recommendations, and can form part of the compendium of measures that can be included in a national action plan on albinism. Most of these measures are relatively inexpensive, yet will be life-saving for persons with albinism in South Africa, thus making the pledge to “leave no one behind” in the Sustainable Development Goals and the National Development Plan a reality for them. B. Challenges (a) Data and statistics 32. A major challenge is the absence of concrete data and statistics relating to persons with albinism. Around 85 per cent of births are registered in South Africa, according to World Bank data in 2012. 12 During the presentation made by South Africa for its third universal periodic review, concerns were raised about obstacles to birth registration for persons with albinism.13 33. At the time of the Independent Expert’s visit, there were no official disaggregated data on disability and thus no such data on persons with albinism. Academic surveys estimate a prevalence of around 1 in 3,900 to 1 in 4,000 persons, with certain ethnic groups and communities in South Africa having as high a prevalence as 1 in 832 persons with the condition. Various genetic and epidemiological surveys report a higher prevalence than reported averages of albinism in southern Africa as whole. 14 34. In its concluding observations on South Africa issued in 2018, the Committee on the Rights of Persons with Disabilities expressed its concerns about the lack of accurate and comprehensive data on persons with disabilities in all sectors, and on the non-inclusion of disability concerns in the monitoring indicators for the implementation of the Sustainable Development Goals. The absence of statistical data and of its dissemination to persons with disabilities in all accessible formats 15 is worrying. The Independent Expert learned that 9 10 11 12 13 14 15 “United Nations rights expert welcomes conviction of mastermind in murder of woman with albinism”, available at www.ohchr.org/EN/NewsEvents/Pages/DisplayNews.aspx?NewsID=21284&LangID=E. L. v. Mandla Lucky Mabuza and Lindokhuhle Sisifo Khumalo, S. v. Siyabonga Sikhulile Gwala and S. v. Bhekukufa Lindeni Gumede. See www.ohchr.org/EN/Issues/Albinism/Pages/AlbinismInAfrica.aspx. See https://data.worldbank.org/indicator/sp.reg.brth.zs. See A/HRC/36/16. See www.firah.org/upload/l-appel-a-projets/projets-laureats/2018/albinisme/rl-en-albinisme.pdf. See CRPD/C/ZAF/CO/1. 7